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30.3.15

Hello my lovely lot. This evening (sunday) I have been a really busy bee, if you read the blog post which was basically a tour of my bedroom [here] you will remember that I have one of those ikea desks and storage unit/shelving units and if you haven't read it then you know now lol. Well I have so much crap on it, it looks loads different to how it looked last year but the baskets that I have on it hide a multitude of sins like; the 10 notebooks that currently have never been used, notepads, torches, electrical stuff, my mountain of skin care products, my mountain of make-up and the accompanying bags for all of it, a basket full of nail varnishes, my photo albums, my extra "stuff" for my flolan pump, my medications, paper, stationary, photo boxes, you name it and it's probably on this shelving unit. I have little display units as well like my transplant box one, my harry potter one and my cute bits and bobs one. The thing is I accumulate stuff and don't like to throw it away well this evening I went through all of the little units on it and it looks much better and is much better organised, how long it will stay that way is anyones guess but for now I have a tidy place to be and I'm certainly a "tidy space, tidy mind" kind of person it just doesn't happen often because I'm am not someone who gets joy out of cleaning I love the end product but the actual process of cleaning is boring beyond belief so I really have to be in the mood for it which usually tends to be in the middle of the night like right now.

Now that my "space" is tidy I feel like I need to get back on track with my eating and just basic exercise. I feel like for the past 2/3 weeks I've been in a bit of a rut with it all I've definitely put on a few pounds I've just been eating what I like when I like and I haven't been doing much exercise either. I don't know why it's just not been happening. Obviously I can't do much exercise as it is but a little goes a long way with me so if I just do some more walking around the house maybe try and climb the stairs a few more times a day if I'm feeling up to it anyway. I'm feeling a bit more motivated to do it anyway so hopefully I'll be able to keep it up and I'm pleased these feelings have come on a Sunday because I am one of those people who likes to start things on a Monday, I know there's lots of other people out there who are the same but it just feels better to start things on a Monday. I plan on being a bit better food wise and actually make my food. I'm naturally what I would consider a person with a "student diet" as in I eat Super-noodles, if I can have Ben and Jerry's for dinner instead of an actual meal I will do, pizza, easy microwave food is just generally how I role as a whole. Today however I plan on planning out my meals and today I'm going to try and make "Ginger citrus soba and snow peas" from a blog I've just discovered called Love and Lemons and hopefully if it goes well it will inspire me to keep at it I even ordered a wok for it :-D . I can't wait till I can actually do exercise and just exercise off my food though LOL.

At the moment I currently feel like I have very little to do in my life and even if I did have things to do I probably wouldn't have the energy to do them I keep seeing everyone doing all these things and just want to join them. I know my day will come where I get to do all these things but you can't help feel a bit envious. So for the time being I'm going to see if I can sort out my food habits and my lack of movement if you will and see if this gets me more motivated.

25.3.15

Who would have thought a 7 letter word could do that? There have been 3 occasions where this word has rightly caused that fear and anxiety because that little 7 letter word has meant a possible life change.

I don't know what pops up on your phone when hospitals or weird companies ring you, I used to have blocked, I assume people either have blocked or unknown, my phone for the past 7 years have had unknown.

I thought when I was put on the list that I would get used to having the word "unknown" appear on my phone screen, that I'd be be able to casually answer it because I know that my local hospital, my medication companies, Hammersmith all call from unknown numbers so you'd think I'd get used to seeing it. The thing is every-time I see that little 7 letter word appear I have to take a massive deep breath before answering the phone and when it inevitably isn't what I want it to be I have to hide the disappointment in my voice when it is someone saying "Hi it's Martin from INR clinic""Hi it's Rachel from your monthly delivery service" etc. etc.

During the day it isn't so bad I don't know why, I think it's because you are told all calls are probably going to be in the middle of the night so you tend to be a bit more relaxed when you get a unknown call during the day. I've had a few unknown calls during the evening though recently and honestly the sheer panic and anxiety that goes through me when a unknown number appears on my phone screen at 8:30pm is palpable. Then I realise that it isn't "THE CALL" and I'm disappointed.

I thought it would go away that sudden anxiety and fear and then the disappointment but in the 2 years 11months I've been waiting, it doesn't go anywhere you just forget about it until you have to do it all over again the next time it appears.

I think it is a bit ironic that UNKOWN is what appears because the phone call I'm waiting for will come on a unknown day, at a unknown time, the organs viability will be unknown and what's in store from that point on will be unknown. Whether that's exciting or scary I don't know but I'm looking forward to getting the real unknown call I'm waiting for.

23.3.15

This weekend was SO amazing!!! A lot of you reading this will know that one of my best-friends is Bernice, we've known each other 2 years even though it feels like forever. We very rarely get to see each other it's about a 4 hour drive to get to each other and then for me it's just you know logistics of oxygen, meds and the fact I can't drive so we only see each other occasionally when we happen to be at hospital at the same time or if something is really pre arranged. A few weeks ago Bernice asked if she could come down and we could see each other, I was SUPER chuffed!!! I had a cold to get rid of though first and Bernice got a chest infection so she had to get rid of that so we didn't infect each other LOL luckily we both did get rid of them :-D

You know we didn't do anything really exciting or amazing but just things that best friends would normally do together if they lived closer. We watched Vampire Diaries (obviously), we put movies on that we didn't really watch because we were talking too much, ate pizza, we went to the cinema (saw Insurgent), I had my first ever Nando's Lemon and Herb though because I don't like spicy food, then it was just more movies, lots of junk food and selfies. It was my dad's Birthday on Saturday as well so the nephews and sisters came round. My cat Alfie has found a very good new friend as well I'm sure he wouldn't have minded going home with Bernice he loved her so much.

It sounds like such a normal weekend and possibly even a boring weekend for some of you but it was such a great weekend for us because we talk to each other practically every day but never get to do the normal best friend things. We are really looking forward to when I get my transplant and then we can just do all of that in hospital while I'm there all the time :-D

We get to see each other again in June for my annual Vampire Diaries convention and Bernice is coming this time (SO excited) unless of course my transplant happens to close to it but getting to see Bernice has really lifted my spirits and I'm just a very happy bunny.

I hope you all had a wonderful weekend whatever it was you were doing :)

18.3.15

Hey guys, I'm sorry I have been a bit absent I've been taking a bit of technology break they tend to help me when I'm not feeling totally myself. I had a Papworth pre transplant clinic last friday and it's not that it went badly or anything that interesting actually happened it just annoyed me and made me mad, that's all I'm really going to say about it I may explain it in the future when I'm not so irrationally annoyed about it or so mad about it but for right now I think it's best if I just wallow and stew by myself with my thoughts.

Because of said wallowing and stewing I always retreat to my bat-cave aka my bedroom and rely on the good old faithful Netflix and therefore wanted to share what I have been watching with you guys.

Firstly we have "That 70's show." 70's is a show that I never really discovered until my teens so probably about 2003 and it was a show that I just watched on the off chance that it was on and never really watched all the seasons but it was still something I really enjoyed. Back in the day I remember it being on a channel called "Trouble" which sadly no longer exists but I think it was specifically aimed at my age group back then. I have really enjoyed watching all the seasons, there are 8, it is set in the 70's and I think there are a few things they probably wouldn't get away nowadays as we are very PC but because of the period it is set in I think they probably get away with it. It's based around a group of 6 teenagers who are in school about 17 years old and their lives in Eric's basement which is basically their hangout area and where they get stoned pretty much every episode. Relationships happen between the characters and it's just what I would call a typical teenage programme going through the lives of teenagers just a bit more dramatised and set in a different decade. I also love the fact that this is when Ashton Kutcher and Mila Kunis met and first worked together and now they are married and have a kid 17 years later (Awww).

Then we have "Once Upon a Time." I think I have mentioned OUAT a few times over the years but I still love it and am absolutely chuffed that it is now on Netflix so I don't have to stream it now. If you love fairytales with a twist or disney stories with a twist this is something you will love. We're onto the 4th series now but when it started it was case of all the characters from your favourite fairytales had, had a curse placed on them bringing them to our world trapped in a town where time did not move and they didn't know who they really were, they were given false lives and wouldn't know any differently until "The saviour" aka Emma turns up on the scene. It's really good and there are points through the seasons where you have to stick with it a bit but I always enjoy it, it's a bit of escapism and takes you away from the real world for a bit.

I'm always looking for new things to watch is there anything you would recommend?

12.3.15

Don't be afraid to do things because they're scary things really aren't as scary as you think they are.

2. Care less about what people think.

People generally don't care what you look like and really probably aren't thinking you're fat because fyi you definitely aren't, you'll find out what fat really is in a few years. People will catch up with you and grow into themselves too, you are a normal size I promise!

3. Enjoy the outside more.

It may seem really annoying to go on a walk or go out to the park with the sisters now but just think in a few years you won't even be able to walk up the road so enjoy it whilst you can!

4. Apply yourself more.

You are actually really smart and if you had only applied yourself a bit more rather than playing on "the Sims" or chatting with your friends on MSN you probably could have done a bit better in school, especially Spanish the grade we dare not speak of.

5. When you're trying to decide whether to go to 6th form or college CHOOSE 6th form.

College was a disaster, you need someone pressuring you with homework deadlines not this airy fairy we don't care if you do your homework or not crap, that is just not how you work...

6....If you still decided on college don't spend your money on copious amounts of snickers and skittles you hated your appearance and where you were and they definitely were not helping you, you could have saved all that money and probably gone on holiday with it.

7. Talk to people more.

You shut people out because you feel like they won't have a clue what you're going through but how could they if you don't talk. People still won't totally understand because they obviously can never completely "get it" but at least they'll be able to help and talk you through it more

8.Grow your hair into a side fringe much sooner than 16.

Your future self will thank you for it.

9. Discover dresses sooner!

Jeans really are not your friend, I know you hate your legs but honestly those black jeans that you basically lived in from 15 to 19 were not your friends they were not good. Yes they were comfortable but really not flattering. Dresses suit you much better I promise and there are always tights for your legs, you will own a lot of black tights in the future.

10. Be more confident.

You only really start discovering yourself at 19, you are a nice person people don't hate you and aren't judging you and if they are they aren't people you want to be with anyway.

8.3.15

When people find out that you are ill, not just normal but dying ill, it seems to change their perspective of you. If someone saw me on an average day doing what I do without knowing I'm ill they would most likely think "she's lazy, a bit chubby, unfit and probably a lay about with no job" this is easy to assume because they would just see me without any of the medical stuff, without any knowledge of me whatsoever. As soon as they learn you're a dying ill person going about your normal day becomes amazing and inspirational, you suddenly become brave and strong. This isn't just me I have many friends who have these terms associated to them because of what they've had to go through and what they have overcome and what going about a normal day generally means in the grand scheme of their life.

Me as a person I really don't want to be amazing, inspirational, brave or strong. I have never known how to respond to people who apply these terms to me, I normally say thank-you but hope that it doesn't come across like "Ooo yes I am totally all of those things" because I have never applied any of those things to myself, if I were to describe myself to someone none of those would ever make it onto my list at all. Maybe people consider what terminally ill people have to do inspirational, strong and brave but I have always just considered it human instinct. What I do on a daily basis is what I have to do to survive both physically and mentally, I believe anyone put in the same situation would do exactly what they can do to get through it, if anything a term I would associate with myself is someone who persevere's but I believe that is just human instinct too if I didn't persevere I would have gone crazy a long time ago.

I say to myself and to close friends that I'll go mad at Papworth if I reach 3 years on the list, it will be annoying for sure because there is no doubt in my mind that life is punishing me in some way for something and therefore I will reach that milestone, but what can I do that I haven't already done? I do what I can to get people on the list, I try to raise awareness for both PH and organ donation, I go to all my appointments, I've moaned to Papworth and talked to them about my worries but really what can they do? It's a situation where your hands are tied, you pretend like you have some kind of control over it all but you don't so you just get on with your life the best way you know how and that usually entails waking up to take your meds/change you IV pump, staying in bed watching "That 70's show" on Netflix all day, take some more meds, maybe a bit of uni work if you can really be bothered, maybe read a little and if you can be bothered to get out of bed go and get some food you know because that kind of keeps you going and it's probably not as healthy as you're supposed to be eating either then take more meds and make up more IV meds and then do it all over again the next day. It's life and you do what you can to get through it. I'm probably being all miserable because I have yet another Papworth clinic coming up and yet again my transplant still has not happened.

I'm trying to see the positives though I really am I promise. I've just got over a cold and am feeling the best I have in a while, I've got my new niece who I've been seeing and my beautiful nephews who I got to play with yesterday and enjoy seeing them ride their scooters. Bernice should be coming down to see me in 2 weeks so long as we are both well and life is just generally okay I'm just annoyed that I'm still waiting and still waiting to really get going with life you know?

3.3.15

On Monday 2nd March 2015 my family introduced my newest NIECE into the world. Firstly I think Me and my mum were the most surprised that she was in fact a SHE we had convinced ourselves that she was going to be a boy because we already have Jaydon and Spencer and Candice had also had Lucas in November 2013 who unfortunately was a stillborn but he was also a boy too, I think we just thought Candy was just meant to have boys.

My new niece was born at 11:03am at a lovely and healthy 7lbs 11oz after a C-section as she was Breech and there was no way to have her naturally. She is currently dark haired and blue eyed the blue eyes will most likely stay as both her brothers have blue eyes and me especially is hoping the dark hair stays as neither of her brothers were born with such dark hair. Her full name is Skyler Elizabeth Rose Wright which is such a nice name I've heard Candy mention Skyler a few times but honestly had no idea what she would end up with. Elizabeth is Candy's middle name and Rose is our grandmothers middle name so I like the integration of them.

She is adorable and I'm so happy to finally have a girl simply for the buying dresses and skirts etc. It wouldn't really have mattered if she had been a boy I just wanted to buy girl stuff that was really my only motivation behind wanting her to be a her lol.

I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.